1. REQUESTING AND REFUSING END OF LIFE CARE Sammy Case s.case@warwick.ac.uks.case@warwick.ac.uk

2. WHAT IS PALLIATIVE CARE?  The active holistic care of patients with advanced progressive illness.  Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount.  The goal is achievement of the best quality of life for patients and their families.

3. WHAT DOES PALLIATIVE CARE AIM TO DO?  Affirm life and regard death as a normal process  Provide relief from pain and other distressing symptoms  Integrate the psychological and spiritual aspects of patient care  Offer a support to help patients live as active a life as possible until death  Offer a support system to help the family cope during the patient’s illness and in bereavement

4. WHAT IS ADVANCE CARE PLANNING AND WHAT DOES IT INVOLVE?  Processes which enable individuals to be involved in decisions regarding future care  Voluntary process of discussion and review  Identifies a person’s preferences in the context of an anticipated deterioration in their condition

5. “UNDERSTANDING” GOVERNMENT POLICIES  National End of Life Care strategy – attempted to raise the profile of end of life care and to change attitudes to death and dying in society  Advance Care Planning  Transform Programme – encouraged use of existing tools (e.g. AMBER care bundle) to improve end of life care within acute hospitals

6. WHO DOES AN ADVANCE DECISION TO REFUSE TREATMENT APPLY TO?  Applies to persons aged 18 years and over who have capacity  Applies to refusals of, not requests for, treatment  An advance decision to refuse treatment (ADRT) only comes into force when a person lacks capacity

7. HOW MUST AN ADVANCE DECISION TO REFUSE TREATMENT BE PRESENTED?  In writing  Signed by the person making the advance refusal and witnessed  State clearly that the decision applies even if life is at risk  DOESN’T need to be on a special form!

8. WHAT MAKES AN ADVANCE REFUSAL TO TREATMENT VALID?  Made by an adult who has capacity  The person must not have withdrawn the decision when he/she had capacity to do so  There must be no lasting power of attorney who has authority to make the relevant decisions  The person must not have done anything inconsistent with the advance decision remaining his/her fixed decision

9. WHEN WILL AN ADVANCE REFUSAL TO TREATMENT NOT BE VALID? What can’t a patient request or when will it be refused (be invalid)  A lasting power of attorney made after the advance decision will make the ADRT invalid if the lasting power of attorney gives the authority to make decisions about the same treatment  Advance decisions will be not valid if they are regarding treatment for mental disorders in person who are detained under the Mental Health Act (MHA trumps MCA!)  Provision of basic or essential care

10. WHAT MAKES AN ADVANCE DECISION TO REFUSE TREATMENT APPLICABLE? The treatment specified in the advance decision is that which is being considered. The circumstances specified in the advance decision are present. There are no reasonable grounds to believe that circumstances exist which the person did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them

11. WHEN ARE HEALTHCARE PROFESSIONALS PROTECTED FROM LIABILITY REGARDING ADVANCE REFUSALS TO TREATMENT?  If the HCP withhold or withdraw treatment because they reasonably believer a valid and applicable advance decision exists  If the HCP treats a person because they do not know or are not satisfied that a valid and applicable advance decisions exists, having taken all practicable and appropriate steps to find out.

12. WHAT MUST BE DONE TO MAKE A LASTING POWER OF ATTORNEY VALID?  Can only be made by a person aged 18 or over  Must be written and set out in a statutory form  Must include information about the nature and effect of the lasting power of attorney  Signed statement by donor, done (attorney) and by an independent third party

13. WHAT LIMITS WHAT A PATIENT CAN REQUEST FOR IN TERMS OF TREATMENT?  Treatment unavailable or not funded by the NHS  If it is deemed to have a negative impact on others (other patients, family etc.)  Treatment is considered futile  Treatment is considered not to be in the patient’s best interests (burden outweighs benefit) BUT Presumption in favour of respecting patient’s wishes and in favour of life sustaining treatment

14. WHEN ARE DO NOT ATTEMPT CPR ORDERS SUITABLE?  If CPR would not re-start the heart and breathing, it should not be attempted.  If CPR is not in accord with a valid advance decision that is applicable in the current clinical circumstances, or with the recorded, sustained wishes of a patient with capacity, it should not be attempted.  Where successful CPR may not be followed by a length and/or quality of life that are in the best interests of the patient